Over One Year - Saturday 8th November 2025 

Note: I started this diary entry a year to the day after I fell ill; it has taken me until today, 8th November 2025, to complete this entry. As with everything in life, at the moment it's slow progress, but every word is an achievement.

It's been over a year since the Ellyllons took over my body and mind, and my entire life. Over the last few days, I've had plenty of time to reflect. (Mainly because I've been stuck in bed with nothing else to do, but let's call it "mindful reflection" - sounds more spiritual.)I expected to be back on my feet by now. But I'm not, and I no longer know what normal is.

Plot twist: A year isn't actually that long when you're trying to negotiate with a neurological disorder that has all the reasoning of a menopausal woman being ID for cider at 50, and have a massive meltdown in Asda - true story - I can never go back in that store.

I can't do 95% of the things I love.

Can't walk unaided. Can't drive. Can't spontaneously decide to pop to the shops. Can't work. Can't dance around the kitchen making dinner. Can't do a whole day without needing a nap (or three). Can't plan anything without the disclaimer "health permitting", which basically means "maybe, but probably not."

Yes, this year the list of "cannots" kept growing. But(and it's a big but) it makes me so very grateful for the 5% I have left.

Which sounds ridiculous, doesn't it? "Oh great, I've lost 95% of my life, let's crack open the champagne!" But genuinely, that 5% feels more precious than the 100% ever did. Funny how nearly losing everything makes you appreciate the tiny bits you've got left.

We are slowly navigating the unknown (NHS waiting lists are a nightmare - I'm still waiting on that ME/CFS appointment and a specialist referral for FND and Fibro) to find the positives as we both come to terms with what our new normal is right now.

Because we've both been through an enormous amount of crap. A whole landfill of crap, if we are being honest.

But we have been and will continue to keep on keeping on. Yes, there will be dark times. Quite a few of them, if this first year is anything to go by. (Spoiler alert: It's been a bit rubbish at times. Understatement of the century.)

However, there will also be silver linings, rainbows, and we will face it together, probably with many more tears, but also more cuddles, kisses, giggles, and shenanigans. One year down. However, many more to go. We've got this. Even when it feels like we absolutely, categorically, definitely haven't got this, we have.

The Year in Review (The Highlights Reel Nobody Asked For):

Things I've learned:

• The spoon theory is real, and I'm permanently overdrawn.
• Invisible illnesses are by nature invisible. Not every day is a bad day. I no longer want to be judged.
• Wheelchair users are often invisible until you need to get through a doorway, at which point everyone suddenly becomes very.
• Concerned.
• "Have you tried yoga?" is the new "Have you tried turning it off and on again?"
• The NHS appointment system is where hope goes to die.
• Paul can cwtch while avoiding all my painful bits (it's like Tetris but with limbs)
• My pain scale now goes up to 11 (Spinal Tap had it right)
• I can dictate thoughts and notes to create blog posts from bed at 2am when insomnia strikes (silver linings!)

Things I miss:

• Walking (obviously)
• My friends
• Dancing, bouncing around on my own two feet
• Working
• My hair (RIP to those luscious red locks)
• Being able to work and earn money (poverty is not the vibe)
• Spontaneity (everything now requires military-level planning)
• Not having to check if places are wheelchair accessible (spoiler: most aren't)
• My independence (this one hurts the most)

Things I've gained:

• Weight! (Trying to put a rye humorous dpin on that one, but it's not working)
• A whole new community of lovely humans who get it
• Appreciation for the small stuff (like sleeping past 6am)
• The ability to navigate festivals in a wheelchair (surprisingly doable!)
• Creating this journal, a source of comfort for me, even if nobody else reads it (hello, if there's anybody out there!)
• Understanding that rest isn't lazy, it's necessary.

Three Good Things:

1. Paul and Connor. Always. Without whom I'd be nothing.
2. A year of this nonsense and they are still here, still patient, still making me laugh even when I want to cry. Still navigating doorframes with the wheelchairs. Paul's purple beard is attached to the best human I know. A year in and I love him more than ever, even if I can't always show it the way I used to. He's seen me at my absolute worst - delirious with fever, unable to speak, having dissociative seizures, crying because I can't reach the bathroom - and he's still here. Making tea. Offering cwtches. Being brilliant. I don't know what I did to deserve him, but I will keep him. And Connor, who is fantastic and always there, for both Paul and me, we love him dearly for all the support, lifts to appointments, cuddles, and tears he's wiped away from my face. He has been amazing in such a difficult time for both Paul and me, and our ongoing health issues.
3. The 5%. Yes, I've lost 95% of what I could do. But that 5%? That's festivals (even from a wheelchair), that's music, that's creating this blog, connecting with people online, and that's discovering a whole community I never knew existed. That 5% is about quality over quantity, and I'm learning to appreciate it. Most days. Some days. Okay, on good days. And today's a good day for it. Ask me again tomorrow when I'm having a pity party at 3am, and I might have a different answer, but for now? Today I'm choosing gratitude. Even if it's gratitude through gritted teeth.
4. Still here. A year ago, I didn't know what FND was. I didn't know if I'd ever be able to communicate properly again after that first hemiplegic migraine. I didn't know if this was temporary or permanent. It was terrifying. I'm still figuring it out, but I'm still here. Still fighting. Still finding things to laugh about. That's not nothing. That's actually quite a lot, when you think about it.

Today's Intentions:

• Acknowledge how far I've come, even if it doesn't feel far enough (baby steps count, Sha)
• Be kind to myself about where I am right now (revolutionary concept, I know)
• Celebrate the small victories (and there have been some, even if my brain's being a cow about remembering them)
• Remember that recovery isn't linear, and timelines are often inaccurate anyway (seriously, who came up with that?)
• Hold onto hope for the year ahead (year two might be better, right?)
• Maybe have a little cry if I need to (anniversaries are emotional, and that's okay - tears are just feelings leaking out like tiny waterfalls)
• Eat something nice ( It's practically medicinal)
• Have a drink or two (definitely medicinal)
• Cwtch Paul and Connor extra tight and thank them for sticking around (and apologise for all the times I've been a grumpy cow)
• Not beat myself up for the 95% I've lost (easier said than done, but I'm trying)

 

Today's Affirmation:

"I am not the same person I was a year ago, and that's okay. I am stronger than I thought (even if I struggle to open a jar of pickles), more resilient than I imagined (even on the days I want to give up), and more loved than I sometimes remember (Paul reminds me daily). My worth is not measured by what I can do, but by who I am. And I am enough. Even on the hard days. Especially on the hard days. Even when I'm lying in bed at 2am, wondering if this is it forever. I. Am. Enough."

One year down, folks.

Here's to finding more silver linings, more moments of joy, more reasons to smile in year two.

Here's to hoping the NHS appointments and therapies start to trickle through, and my recovery can really begin in earnest.

Here's to more festivals, more music, more life.

Here's to the 5%.

Here's to KOKO. Keeping on Keeping on

Here's to us - me, Paul, Connor and everyone else navigating their own version of Ellyllons. We've got this. One day at a time. 1% at a time. One doorframe collision or toe rolled over at a time.

Love, Sha x

P.S. If you're reading this and you're also marking an anniversary of your own diagnosis, your own life-changing moment - I see you.

Whether it's been a month, a year, or a decade. Whether you're feeling hopeful or hopeless today.

Whether you're celebrating progress or grieving losses (or both at the same time, because chronic illness is weird like that).

You're still here. That matters. Be kind to yourself. Keep on keeping on. We're all in this together. Even when it feels like we're all alone.

P.P.S. Paul just brought me a drink without being asked.

Year one achievement unlocked: He now knows exactly how to make a girl happy. It's the little things, isn't it? The tiny victories. The small kindnesses. The silver linings, the giggles and smiles.

The sunrises and the sunsets. The moments that make you think, "Okay, maybe we can get through this."

P.P.P.S. To past Sha, over a year has gone by. It's been scary and confusing, but we have made it this far, and these ramblings are a reflection of that - a reminder to keep looking back at, to keep us grounded. Although we have so much we want to do and say, we will get there.

We're still here.

We're still fighting.

We are still loving

And we're going to keep going.

Namnaste